Normal Is Overrated

Musings and meanderings on the autistic spectrum

June 3, 2007

An Autistic Speaks about Autism Speaks

[Note: This entry was originally posted at DailyKos; the original version of the post, with its comments, can be found here. I'm reposting it on my own blog, with some slight modifications so as to make it more timely and to reach an even wider audience.]

Imagine, if you will, that an organization existed by the name of “Womanhood Speaks,” which, on the surface, appeared to be in support of women’s rights.

Now imagine that the governing body of this organization only included members of the male gender, with not one female represented in its ranks. Imagine that its actual aim was to create a registry of all females and force them to become more masculine, completely disregarding the fact that a majority of females were perfectly content with their womanhood and even found it to be advantageous. Imagine that members of its leadership appeared on popular TV programs talking about the epidemic of womanhood and how it needed to be eradicated.

Doesn’t sound too appealing, does it?

This hypothetical situation may seem utterly absurd, but for one segment of the population— albeit a much smaller subset than that identifying as female*— it isn’t all too far from reality.

I’m speaking of autistics, and more specifically, of the organization known as “Autism Speaks.”

Such a deceptive name. After all, a fair number of autistics are unable to speak; the name Autism Speaks suggests an organization that is willing to speak on their part for greater acceptance and improved services that might enable them to more actively participate in the world while still being able to benefit from what strengths autism might provide.

And autism does have its associated strengths: a dogged persistence; an ability to look at matters objectively and logically; an ability to focus on details that others might miss entirely. If we get rid of the “bad” aspects of autism, we’re also likely to get rid of these traits that, to be honest, can be extremely advantageous in certain lines of work.

In truth, however, Autism Speaks is not very amiable to autistics.

First off, despite the group’s ostensible aim of speaking for autism, there is not one single autistic on its board of directors, or otherwise represented within the ranks of the organization. There are plenty of autistics who are fully able to advocate for themselves, who are fully able to express what sort of support they would benefit from, and would have benefited from as children; however, Autism Speaks wants very little to do with them.

Secondly, and more importantly, the public face of the organization belies its true intentions. Perhaps most notably, Autism Speaks recently allied with another organization that’s also somewhat infamous in autism circles, an organization by the rather presumptuous name of “Cure Autism Now.”

(Just for clarification’s sake, I should point out once again that, though I protest cures for autism, I am not against seeking services and support to aid autistics, or even to ease the lives of parents of autistics. This seems to be a very common misunderstanding; see, for instance, this blog post by autistic advocate Joel Smith on that subject.)

Indeed, I’d go so far as to say that some significant members of Autism Speaks’ leadership simply don’t understand the point of view of autistics.

Take, for instance, the case of Alison Tepper Singer, the vice president of communications and awareness for Autism Speaks, who was also prominently featured in “Autism Every Day,” a fundraising film made by her organization. In one rather famous— and controversial— scene, Singer describes a moment in which she was so exasperated, she had seriously contemplated driving off a bridge with her autistic daughter. A pretty callous thing for any parent to say, but particularly so in front of the child being described, as was precisely the case in this video. Should I mention that the child in question is clearly trying to show affection toward her mother, and being shrugged off, mere seconds before this statement is made?

For those who wish to watch the video in question and see the evidence for themselves, I’m not going to give that video any greater Google ranking by directly linking to it, but a link can be found in Wikipedia’s article on the film, which also discusses some of the criticism thereof.

And if you think this sort of rhetoric has no effect, tell that to the family of Katie McCarron, a three-year-old autistic child from Illinois who was suffocated to death by her mother slightly over a year ago. It may be mere coincidence, but it’s worth noting that this murder occurred just four days after the initial release of “Autism Every Day,” as pointed out by Kristina Chew of Autism Vox. Chew also quotes Katie’s grandfather Mike, who has no kind words for so-called “advocates” of the Autism Speaks sort. There’s not even the excuse of McCarron’s mother having been an overburdened parent in the vein of Singer; as the Coalition for Citizens with Disabilities in Illinois mentions, Katie had not lived with her mother for some 20 months before the incident. Yet that was the primary spin given to the story by the media: an expression of sympathy for the mother, with almost no attention given to the thoughts of those who were Katie’s primary caregivers.

Yet Autism Speaks has major clout. They’ve allied with popular children’s stores such as Toys R Us and Build-a-Bear Workshop, accepting donations from shoppers there (while not making it quite clear what those donations might be used for). Representatives have appeared on popular TV talk shows such as “Oprah,” “The View,” and “Larry King Live,” presenting a very one-sided view of what life with autism entails— while barely allowing critics the chance to present an alternate viewpoint.

Oh, and one of their biggest promoters by far was Don Imus. Draw from that whatever conclusions you wish; I’m not touching that one, other than to point out that he was no stranger to controversy and that he had a large captive audience.

And they’ve been hitting close to home for me lately, in the literal geographic sense. In Atlanta several weeks ago, the combined force of Autism Speaks and Cure Autism Now sponsored a so-called “walk for autism” that gained a fair amount of local and regional publicity. (An interesting definition of “for,” to be sure, when one of the organizations involved is clearly against autism judging from its name alone.)

And today, Autism Speaks is going to have an even larger audience, made up of NASCAR fans. No, I am seriously not making this up. The race that used to be known as the Dover 400 is being held this afternoon, but under a new name, thanks to the wonders of sponsorship; it is now the Autism Speaks 400. (Insert your own joke about autism and repetitive behaviors here.)

So that is why I’m posting this blog entry. It’s to get the word out from the other side of the autism debate, the one that doesn’t get all the media attention. It’s in the hope that someone, anyone, who participated in the walk might start to have second thoughts about it. And most of all, it is with the hope that others like myself can get the support we need to live in a sometimes frustrating society, not a cure that is forced on us without our acceptance.

Autism Speaks surely doesn’t speak for this autistic— nor do they speak for numerous other autistics and advocates, for that matter.

* This sentence, which originally read “…than that with two X chromosomes…”, was revised on 1 August 2011 upon the author’s realization that not all women have two X chromosomes. Mea culpa! (back)

Filed under: Autism Speaks,Controversies — codeman38 @ 12:39 pm

13 Comments »

  1. This is a very timely article for me. As a music therapist who works with children who have autism, I was all but signed up today to participate in the Autism Speaks walk. Before I clicked continue, though, I decided to do some research about the organizer. I was not pleased with what I found and backed out. Thank you for expressing your opinion. I appreciate the reassurance that my decision was the right one.

    Comment by Erica — September 13, 2007 @ 11:20 pm

  2. I LOVE how you emphasize your point using “Womanhood Speaks!” Do keep up the great work!

    Comment by Sheila — March 27, 2008 @ 3:46 pm

  3. Love the article. I posted a link to it in my blog. Hopefully more will see it that way.

    Comment by Jenni — June 20, 2008 @ 1:32 am

  4. Thank you, Cody, for putting this so eloquently. I have a hard time putting my frustrations into words. I’m bookmarking this for future reference. I also added FaceBlind to my communities on livejournal. I never knew other people had the same issues I do.

    Comment by Jude — June 22, 2008 @ 1:09 pm

  5. This is really good with a lot of good points. I also think the Womanhood Speaks is a great example.

    Comment by Ed — June 23, 2008 @ 6:37 am

  6. FANTASTIC argument about an organization that advocates for people with autism . . . without including a single autistic person in the decision making process! Thank you for reminding us of the unique gifts of autism (one researcher I’ve studied believes that ONLY people with autism can rise past a certain level in certain theoretical fields), and thank you for reminding us that many people with autism wouldn’t have it any other way.

    Comment by Sarah — January 24, 2009 @ 12:07 pm

  7. Thank you for writing this article, and for the links to other advocates who speak from the inside of an autism diagnosis. I work with children with autism diagnoses, and there is a new organization starting up in our area that hopes to become an information clearinghouse and support organization for children/families affected by autism. I have been asked to participate, and one of my first actions is going to be to raise this very issue, and to ask that we seek adults in our community living with autism to serve on our board/committees. Tito Mukhopadhyay and many others are saying the same thing–that people with autism can speak for themselves, and that the real problems lie in societal ignorance, bias, lack of education and exposure to real, meaningful information on the subject of people with autism. I struggle every day in my work with how to provide respectful, intelligent and beneficial sessions for the children with whom I work. Presumption of intelligence is my starting point. How much we healthcare professionals need the voices of people like you who can guide us so that we can actually aid a child, rather than frustrate or patronize! Please keep on speaking out–there are many who are listening. I will do what I can in my limited sphere. Thank you again for writing.

    Comment by L Stone — February 19, 2009 @ 2:06 pm

  8. Thank you for this entry.

    My university is signed up to do a walk/run for this organization, and I am enrolled in it as well, but this has given new light to the facts. (Though I’ll still be participating, since I’m already signed up.)

    It’s always great to look from both sides of the spectrum, especially as a special education major.

    Comment by Hiro — March 23, 2009 @ 12:37 am

  9. [...] best person to explain what is wrong with the organization and their model of response to autism.  So here is some information from someone who can explain better than I: Imagine, if you will, that an organization existed by the name of “Womanhood Speaks,” which, on [...]

    Pingback by Things That Pain Me : The Curvature — April 6, 2009 @ 11:00 am

  10. [...] interview in the film that drew significant controversy was that of a mother describing that she did not kill her autistic daughter only for the sake of her other, non-autistic, daughter.This was said in [...]

    Pingback by Rodentfancy - Representing Autism: Culture, Narrative, Fascination — April 25, 2009 @ 4:43 am

  11. Thank you for your insight and courage to speak out about a group probably started by rich people who had never given a thought to autism until a child in the family was diagnosed. They are used to throwing money around and giving big dress up charity events. Helping others is not their forte.

    I constantly hear about autism and children, fine, but the adults are overlooked.
    Many adults with autism are in greater need than the children, who still have their parents to advocate for them. The children are cute, the adults usually are not.
    True many adults with autism can self advocate, but many cannot and no one is there for them.

    Thanks again for your fine blog.

    Comment by betty samson — July 26, 2010 @ 9:57 am

  12. Autism Speaks only speaks for themselves and not the rest of us and the sooner they realise we can speak for ourselves the better it’ll be for all.

    My advice to Autism Speaks is to get out there and speak to some real people.

    Comment by Selena — September 12, 2010 @ 2:58 pm

  13. [...] speak over us, and don’t make a pretense of being advocates for us without including us. Don’t give your money to Autism Speaks, and don’t light it up [...]

    Pingback by Autism Acceptance Month, You, and Me | Planting Rainbows — April 13, 2013 @ 5:41 pm

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